I am so angry and disappointed that my best attempts to taper prednisolone to the lowest I have achieved in five years has failed. After four years at 8mg and recent twelve weeks of counselling support for my long term PTSD I was so pleased with myself for managing a slow taper via 7.5mg to 7mg. Big pat on the back! Then along comes a WAR! and I have spiralled out of control. I hoped a quick recovery package of 10mg pred would get me back on track, but after a week I felt worse than I have in years, full blown flare and levels of pain I had forgotten.
My new GP has advised me to stay at 10mg for a month, then try to taper to 9mg and slowly try and get back down again. He approved propranolol for my anxiety and suggested I take my 10mg as one morning dose so that I do not have disturbed sleep.
I have always split my dose so last night I took 2.5 coated pred at 9pm and 7.5 mg uncoated this morning, but of course my body has not had a 7.5mg hit of pred for YEARS and I have been as high as a kite this afternoon, dizzy, blurred vision, headaches, real DURACELL bunny.
I recognise that I am RAGING because my own manageable life and health has been jeopardised by what is going on in the World right now. I am consumed with RAGE and at the same time consumed with sorrow for those who are unwitting victims of a madman, and his madness spills over into my life and everybody else’s.
Please forgive the rant, I need to share.
My real name is Chrissie and I welcome your support.
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Zebedee44
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I share your anger at what is happening in Ukraine and yes, the flow on affect in regards to stress and physical and mental health is obvious. You sound like such a fighter in regards to your condition. Perhaps the anger will help fuel your determination to keep on with the journey against PMR and get back to where you were a few weeks ago. Best wishes.
Thankyou. I felt I was in a good place before the invasion of Ukraine kicked off and now I’m struggling again. I sometimes think my “fight” response was probably a major factor in starting my PMR five years ago , the PTSD having long been a battle I wasn’t winning. My ex husband was in the British Army and I faced many challenges alone while he served in war zones while my children were young, but then I was safe in my own home. This war against the people is something else, and the RAGE that goes with it is off the chart. My heart breaks for them.
Iam equally upset over the war in Ukraine.Ive had to limit my time spent watching the news It's very stressful and we feel so helpless against what Putin is doing.All of us at times feel like we have failed with our managing this disease.Sadly most drs don't seem to know much about pmr and we just jug along hoping we make the right decision s on our symptoms.I wish you well soon and you re not alone.💕
Hi Chrissie so sorry you’re suffering so much and having a long journey with the ghastly pmr. However we have no choice but to take what pred we need, many people need 10 mgm plus to get some quality of life. I’m so glad to hear of your lovely welsh pony, what a comfort he/she must be to you. I’ve had horses all my life & many a time they’ve saved my sanity when I’ve escaped to spend time with them. I have a friend who suffers from anxiety & she doesn’t listen to the news at all hence protects herself from taking on board the worst of the world . Hope you find a way through, spring is nearly here, fine weather & sunshine will do you good.
Thankyou. My pony is my “go to” for sanity and comfort but I find it hard to manage to care for him and to drive him when my body is hurting and my energy is gone. That’s why I am so angry with Putin, his madness has no bounds and we are all going to be hugely affected. I am starting planting a few veg up at the land where the pony lives, and waging a personal war against the resident rats! I’m not expecting much to survive to be eaten by me, I have a vast badgers sett on the land and plenty of other predators and invaders, ground and aerial bombardment. It’s my personal war effort, and keeps me sane.
Hi, Chrissie. I'm in complete agreement with Sheffield Jane regarding hanging on to all those commendable humanitarian actions being carried on across the world to help those who are suffering so badly.We are on the outside, so to speak, and are watching on from thousands of miles away with horror and despair for Ukraine and all its innocent victims wishing we could do something to help. I've actually considered offering a place to stay for perhaps a mother and a child, if allowed, but thinking it through accept that due to my age and health issues it wouldn't work.
Can you try to replace your rage by filling the space it occupies in your mind with continuing to care for and spend time with your beloved pony and nurturing your veggies and getting rid of those pesky rodents? Make a little diary of each day's accomplishments. Fill your heart with praise for those who act with such compassion and selflessness and remember to praise yourself for all your small personal successes.
Pop back here now and again to say, "Today I managed to......" That would cheer us all up and spur us on to keep going.
Thankyou for your support and yes I will give Piper a special stroke from you. Keeping my pony throughout PMR and Covid and now God knows what has been my saviour and my sanity and we are certainly in insane times now.
Yesterday I managed to drive to Ashford in the dark to look at an electric motor scooter I could use to get to the pony’s field and save fuel. Today I am a volunteer at the Hospice Furniture Shop. That’s a tough call when my PMR is flaring but good for me to have social contact.
Pony with carriage and driver in a field of grass preparing for a show
Piper is so handsome! Thank you sharing the photo.I admire your tenacity in helping at the shop and driving in the dark-something that I haven't done for ages.
I hope you're finding some time to rest and recover after doing all the necessary things 🙂.
I think your reaction is perfectly logical. He is behaving like a monster. It’s making me cry a lot, especially the signs of resilience, like the little girl singing the Disney song, from Frozen in a bomb shelter - so beautifully, like an Angel. Also Ukranian people comforting a very young, crying Russian soldier, giving him desperately needed food and drink and helping him ring his mum. Also the rows of pushchairs waiting for refugees at the Polish borders, for mums with little ones .This are the things to hang on to, little human moments in the midst of tragedy. We are part of the world and can’t escape from what happens in it. Try to ration the news you watch. It’s not helping you. Rant and rage, it’s warranted.
Thank you for your support. You are right, the news reel is mostly the most dreadful images but the stoicism of the people is incredible, and I feel a need to keep informed about what is going on to understand. Except I cannot understand how this can happen and never expected to have to deal with it again after my husband left the forces. And I am reminded it is happening every time I pass the garage where fuel prices rise by 10 pence each day, which is going to have a significant impact on my life and everybody else’s.
Good morning Chrissie, What a huge disappointment for you having to increase the Pred....many of us are in the same boat. A month or so back I managed to taper to 6.5mg lowest for me, but unfortunately, GCA set in again so had to go back up. Currently back down to 7.5mg which I'm loathe to taper from. I'm just starting my third year with PMR/GCA. Try not to allow yourself to get anxious over nothing any of us can do about. I've cried buckets watching the news and many a time said to my hubby, imagine if we were in those poor Ukrainian's position. He can't walk with needing two new hips, he also has type 1 diabetes and CKD. And me needing Pred and inhalers for my asthma. Those poor people that are disabled, cancer suffers the list goes on. You need to try not to let it affect your own health. Putin is a madman and has no soul, what an awful human being. We've all had a couple of awful years with Covid and now this. Do take care of yourself and hope your anxiety calms down. We're all here for you on this wonderful forum that has helped me so much during my journey.
Thankyou Anne, I turned to this forum yesterday knowing the support would be here but not sure if it was appropriate to raise this subject on the forum. People here are kind, I am grateful for that.
Pretty sure what you've said will be fine. Lots meander onto other subjects, me included, particularly if what's going on in our lives is affecting us. Life is so hard these days. I was hoping in retirement everything would be good. Sadly, as we age everything starts to go wrong. I'm praying my hubby gets his surgery soon as his pain is increasing and that's a lot for him to put up with day in day out. Our only child (daughter Jen) will be here soon to pick us up to take us to Bluewater (our Mall) to get us out of the four walls. I feel guilty moaning when we see how badly the Ukraine's are suffering....bless all of their hearts and hoping soon it will all end. Just wondering though ol' Putin won't want to lose face by giving up. You can always privately message, just like face book if you'd feel more comfortable.
Hi Chrissie.Firstly, I'm really sorry that you're feeling so unsettled. I like many others share your concerns and for some of us that could mean a possible re-emergence of symptoms as a result of the stress that induces.
Throughout our experience of PMR/GCA there will be many different situations we'll encounter that may inhibit our recovery......some that will be out of our control and impossible to avoid, and some that we may be able to 'manage' in a way that has little if no impact on us.
It's important during these times to try and maintain as calm a demeanour as possible, recognising that as the 'stressor' unfolds there may be little we can do to eliminate it but that there will be things we can do to determine how we react to it.
In your situation I would suggest keeping access to information minimal and focusing on simple ways you may be able to be proactive in engaging in something positive.....eg. I have collected items and delivered them to a local drop off centre where aid will be transported to where it's needed.
It's a small thing but channels my frustration and sadness in a positive way rather than a negative way. It doesn't change the situation but it does change how well I deal with it.
Your anger is completely understandable but it is an emotion that 'destroys' rather than 'builds'. We have to try and use that energy on something more positive and worthwhile, otherwise we'll get stuck in a cycle of self-absorption and self-destruction.
Tapering our steroids can be extremely challenging and we are often repeatedly knocked back in our efforts to do so. However difficult it may be though, we do usually get to our goal eventually, and perseverance and patience will pay off. Try and keep thst in mind if you can.
I wish you all the best with your continuing taper and just try and be kind to yourself too.
Thank you for those sensitive and well considered words. I also felt empowered by putting together a few of the things on the list of items needed by front line Ukrainians. My ex husband served in the Balkans and I feel like I am being forced to revisit that period of my life which was difficult for me. I feel the pain of separation those families are going through as their men return to defend their country, knowing how much my husband needed and wanted to be proactive in the Balkan war. It is fear, anger, pride, loss, I find it hard to forget.
You've been through such a lot and this is clearly a challenging time for you.I hope that you feel supported in some small way though by your friends here.
Always good to vent anger. PMR controls us, not us controlling it. Maybe you can buy a voodoo doll of Putin and put a pin in it when you feel your anger flairing up. Can you take a walk? or have a coffee with a good friend. I always think misery shared is misery under control.
Hello Chrissie ~ l am so very sorry for how you are feeling at this time & the impact the terrible situation in Ukraine is having on you.
I don’t think that there is anyone who is not affected by it all, last week all l could say ‘I never thought l’d see this in my lifetime.’
The horror of watching Men saying good bye to their wives & little children was devastatingly heartbreaking. I have Sons & Grandchildren & can only imagine the heartbreak 💔
That being said, you cannot allow this to make you ill - and ‘rage’ is not a good emotion to carry around with you - as now you fear it’s impacted on your own health.
You really need some strategies for coping & dealing with this otherwise it will accelerate.
Try to limit how much you watch the news or read the papers, my husband can only watch the news once a day at lunchtime as it is causing him anxiety.
Is there anything you can do practically to help - maybe at the Centres where they are collecting or packaging parcels to send to the Ukraine.
I’ve attached you a link on Every Mind Matters - it was prepared for coming out of Lockdown but there maybe something in there that could help you.
Thankyou very much for the link. There are some useful tips and video clips and contacts. I was supported up to last Christmas by Health in Mind, a local Sussex agency, and was so pleased to manage a taper of 1 mg over 5 months. I started volunteering at a local charity outlet and was starting to feel part of society again. But today we had two incidents of shoplifting by repeat offenders during my brief shift which fuelled my anger and I’m not sure I can keep myself from letting rip next time I see them, which might not be appreciated by the charity.
It’s been good to get the feedback from the forum today and I am glad I vented a bit here.
I’m with you…I was down to 4mg (& it was hard). Now I’m at 10mg & fuming! My best friend died two weeks ago, age 66, I got my 5th tooth infection in 2 years, & I’ve watched some of those videos that warn you there’s nasty things to see (but I felt I shouldn’t stick my head in the sand). All of the shoulder trouble came back, all just like day 1 of poly! The weather has been poor & we haven’t been able to see our ponies & donkeys as much (live in the New Forest)..but have been seeing more of our neighbours puppy! But on 10mg I have been overdoing it completely, yesterday I ferociously cut half a hedge, weeded two borders, did housework, generally thought if I kept at pace none of it would affect me! After 3 hours sleep, I’m wrecked this morning, & deserve it!! The skin splitting has returned, the red rash on my neck spreading & angry, the pouring sweats etc etc! I’m dropping back to 4mg tonight, will see what happens. Your problems are much worse than mine, I have no PTSD, I only tell you this in the hope that seeing somebody else’s body is also behaving badly, it may make you feel less alone. My saving is three fold…I’m not a Ukrainian, I have a loving husband & I’m not sick like my beloved friend was. Keep optimistic & find something each day to make you happy, just you, even for just ten minutes…eat the whole chocolate bar, cuddle & feed your pony Polos, think of taking up a new hobby, for example…take care, S xx
Thank you Pixix, I am in no doubt that others have noticed a response in their bodies to this outrage, and I most definitely WILL eat all the chocolate, hug my dogs, and embrace my lovely pony. He might have to get used to not getting a his daily feed soon as the price of fuel gallops up. But I still need my daily grounding in his company, inhaling his warmth and solidness. We all thought the end of Covid would give us our lives back, didn’t see this coming!
No, we didn’t…& I’m honestly not feeling negative, but the Covid numbers (daily cases) are rising in counties on the south coast! North is not so bad. Over 60,000 new cases reported yesterday. Stay positive & I really hope your PTSD calms again, as you learn to deal with this dreadful situation. There’s a man in our village who was bombed in the war in London, & he says it’s taken him right back to the dreadful nights in the underground Tube stations…he never thought he’d see the same happening anywhere again in his lifetime. Hugs, S xx
I never thought I would have to watch what I did as a child and for many years later. Yes, man's inhumanity to man is unexplainable to me. Over the years, wars have never stopped, but this time it is different - we have nuclear capability and the fear has always been that a mad human would be able to get control.
I watch in horror as I remember news reels during the war and for the first 6 years of my life, not knowing my father.
Chrissie, you have nothing to apologise for, many times we just feel so helpless that we just cannot cope, and then rage against our inability to help, which is quite understandable, However you are coping and have had the sense to reach out and share.
You have proved you are a human being who cares - just like so many others who also care but are helpless to stop the madness.
I know how thoughts and worry can affect the body and it can be so difficult to let go. But you must look after yourself. Try to set aside some time each day for some meditation or mindfulness. This clears the mind and relaxes the body. Mrs Nails's link is a start, and there are lots of helpful tips and guides to free meditation techniques online.Hope this helps.
Dear Chrissie, my heart goes out to you on so many levels - the flare of your PMR, just when you thought you were winning; also the fact that this deadful war in Ukraine is reminding you of a difficult time in your life when your children were young, resulting in making you so angry and ill; then the financial implications for us all.
Is it possible to access any more sessions of counselling, which would give you the opportunity to talk about how you're feeling? It seems that your new GP is approachable.
I'm sure you have techniques to help with the PTSD which you might be able to use now?
For the rest, I agree with what others have said about limiting your exposure to the news and spending as much time as possible with your animals and tending your vegetable plot. Pigeons have taken a liking to my purple sprouting broccoli, which I have tended for almost 12 months, but that seems so unimportant now.
Try your best to focus on looking after yourself and the animals. Apart from supporting the appeal for Aid, that's all most of us can do.
Chrissy, my husband and I can so relate. He cannot bear to watch any of the war because he was a child when the Americans bombed Stuttgart his home city. He is 87 and was 11 when the war ended; he was hungry, his house was bond, they ran to shelters every night. He was evacuated to his grandparents in another town that wasn’t a target. So for my husband is very real. I was a medical background just feel sick when I see hospitals bombed. We don’t watch the TV very often. We may just get a summary of the day. What we did do was give us an actual support to courses that help Ukraine. I was able to assemble things I didn’t need for someone in town with her family in Ukraine: I had extra first aid equipment, bandages as well as a good knapsack. So I felt doing something positive helped me. I’m a person of prayer and I do that too.
It does not help to be angry ; We must do everything we can to preserve our health and sanity. Anything else is counterproductive-although this is a natural reaction to what we see.
I am focusing right now on improving my physical condition which is as weak as can be. I will be 80 in May. I found some videos on YouTube featuring an 80-year-old mom and her daughter who is a fitness trainer. They have numerous videos for the elderly starting at the very beginning and progressing on. I could not do what the 80 real mother could do on the video. Think about that.
Thankyou for your reply and I do feel for your poor traumatised husband. On this forum we are united by our shared experience of PMR and/or GCA and I have taken great comfort today from the replies I have had to my post.
Couldn’t be more sympathetic. I had got down to 7mg after nearly five years and was ok. Then family stress and war broke out and familiar symptoms crept back. Now hanging onto 7.5mg. Trying some gentle yoga and stretching to put back a sense of control - of myself if not the world. So ashamed of our UK response to allowing refugee access to our country which doesn’t help either!
Hello Thelmarina, good to hear from you and know I am not alone. The whole desperate situation motivates me to be more generous towards the Ukrainians in whatever way I can but at the same time so very very angry with the men that have disturbed all our lives out of sheer greed for power. And back up to 10mg with a slow taper ahead is frustrating after 5 years when I thought I was doing so well.
People like you who are angry and horrified by this gross evil are the promise that things will get better again. Indeed, there are more people trying to help Ukraine than to hurt them. But it costs us a lot, and however much we donate or email or sign petitions, we are still left feeling more or less powerless, which is very hard - but only for the time being.🌈
Hi Zebedee44I totally sympathise with how you’re feeling about the awful news and cost of petrol etc and cost to our health
I have found what helps me is to do a little something to help ie got some food/pet food together and took it to a place where it is now on the way to the polish border - that doesn’t have to cost a lot if you get neighbours/ friends involved
PMR wise I got given a depo medrone injection over 4 weeks ago and had my Steroid dose increased to 2.5 mg from 2 and so far so good! Staying there for another 2-3 months before I try again
Yes, I too felt better after taking a bag of hardware and clothing listed by my nearby collection point to go out to Ukraine. I find people don’t want to talk about the horror that is going on because the consequences are so terrifying. So I am glad to find some understanding and advice here in our community. Thankyou
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